Reaching Me

 I speak now. I have a lot of words. I still have trouble finding what to say, but it isn't noticeable in social situations if I smile n shake or nod my head. Writing is my better response. You can reach me.

I commented on a story. The article is long, long, long. It is more than my eyes and attention can handle. So I'm breaking it down and pulling out issues that pertain to me.

The article is at:  Alive inside: How do we reach ‘vegetative’ patients when tests show they’re aware of everything
All quotes in this essay come from this article.

I couldn't move or speak either. It has taken me years to get where I am. It could have been faster, but I have no help. I used to do this for babies, so I know how to do some, but my physical development is up to a toddler now. I'm winging it from here.

My cognition is off the chart. My sass will get the better of any tester.

It has been years. I have gotten some therapy here or there, but most is Range of Motion exercises that I performed. As for speaking, I'd sing along with music, I'd talk to my computer, and there are a few puzzled telemarketers out there.

I still have the feeding tube. It is hospital grade. It is not like the ones I have seen in the community. That could just be me, though. I worked in community care a while ago, and medicine has progressed. I am now able to purchase medical grade feeding tubes and have them shipped to my home.

I have taught family and caregivers on how to do the feeding. I have taught how to use a feeding bag and how to do it by hand. All instruction is verbal. I cannot demonstrate.

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This was my problem. "The only patients that benefit are the people who make it into other research." My insurance ran out because I used all of it. That was a political issue that was taken care of, but could be reinstated.

Speaking is something I taught myself how to do. So is typing with one finger. A person can teach their self. That is what I did. Right now, as I write, this is cognitive and fine motor exercise. People are so quick to forget that I worked in rehab.

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I remember being like this. 20%  of vegetative patients are aware. That means that in a room full of 10 patients, 2 of them can hear you. In my case, one of them wrote about it.

By the end of my hospitalization (4 years) I was arguing with a nurse that I was conscious. She said "you're escalating." That was my cue to shut up. In mental health that meant sedation. I didn't know about the hospital.

Soon after, family signed me out. To this day I am vegetative. I doubt you can tell unless you look at the wheelchair or the hole in my neck.

You can see that I do it myself.

and leave videos for others on the internet.